Dear Juvenile Arthritis… I Really Hate you.

My son enjoying jumping in puddles on a good day

Today was nerve-racking as we had to make a call to my sons rheumatologist. A few days ago my son was awoken at night because he was really sick. Juvenile arthritis reared its ugly head back into our lives, it never really leaves but it likes chaos at my sons expense. I hate arthritis because no child or person deserves such an ugly disease.

I have talked about arthritis in previous blog post but I can never truly get the words out on how much I hate watching this disease hurt my nine-year-old child in vicious ways. When I envision arthritis in my head it would only be described as a glob of goo with malicious smiles smearing across its face. Everything about this disease is horrifying because as a parent, the feeling of not being able to ease their pain is heartbreaking. Telling your child they cannot do certain things because this disease takes away from it is gut wrenching. Watching your child not being able to walk for more than ten minutes, or watching them be unable to do things regular children can do is indescribable.

With each appointment, each version of medication not working, each symptom that can change any day is unfair to the child that lives with it. I’m angry with this disease so angry that sometimes it breaks me as a parent to my brave warrior. The pain is one thing but holding your child because he is depressed because he feels his body failed him make you as a parent feel like your failing. I’m a mother who has an amazing son and I feel like I cannot protect him from the bad in the world because it is his body attacking him. The immune system which is normally marvellous in the jobs it performs failed at the task of being my sons defender. I’m angry; I created this failing body. I grew this body for nine months and the first day I held him I promised to keep him safe. Failing in that promise is beyond my control, but his body and immune system is failing non the less.

Being scared of what’s next is part of the deal when you have a sick kid. Before every appointment even though not religious: I pray for good news. Especially during this difficult time of being in a pandemic. I remember the first time we got our diagnosis I promised my son I would be there for every appointment, so he won’t be scared. Praying and setting mental pleas to the universe it went unheard. I cannot be there for my sons injections. His stepdad will have to take him and I will keep pleading with the universe for him to safe. This disease is scary for everyone, yet somehow my superhero of a son finds a way to stay beautiful.

Three nights ago I was holding him while he threw up and had a bad case of diarrhea. Last week he was in so much pain from walking half a block to the mail box. He said to me last night I hate my body mom it’s not nice to me. Followed with why does my body hate me because I want to love it but it’s hard. I wish there was a magic wand I could wave to take it all away from him. Instead, I will hold him longer and try to be there because he needs me to be strong for him.

2019 Halloween he struggled to walk more than a block. We had to pull him in a wagon because he was not going to miss trick or treating. Halloween is his favourite day.

I will say one thing that I admire out of this whole nasty disease is the children who live with it are so brave and fearless. They are true superheros in the face of adversity. My son and other children living with this disease are stronger than words can describe. I admire his courage and faith that he will kick this diseases butt one day at a time. Even though this disease is taking the piss out of our lives right now I know in my heart my son is the strongest little man and I can wish to be half as brave as he is.

One month after intramuscular injections. He walked Princess Macy to the vet.

Written by Ali Johnson

I asked permission before adding this photo. This was at sick kids before going in for his last procedure. He was telling jokes to the nurses because laughter is the best medicine.

Parenting a sick child (Parenting)

What is parenting a sick child? I can say for sure it’s not something I would wish on my worst enemy. My eldest child has two illnesses; one is autism, the other Juvenile Arthritis. I am a selfish parent because sometimes being the parent of a sick kid is exhausting. With each diagnosis and doctors appointments with never good news, sometimes I imagine running away and finally breaking down. People don’t talk about what it’s like to be a parent of a sick kid because the feeling attached to it is judged heavily.

I’m the mom who breaks down in my car before work after appointments. I head in with a smile and try to make others day manageable. Convincing me to get out of the car and put on the brave face is ridiculous. No one on the outside is allowed to see the drowning sorrows of motherhood. I don’t want anyone to know that I feel guilt because my child is sick. It was my genetics that gave him the issues that he has. I’m selfish because I want to hate every strand of my genetic code. Placing blame on something feels good to do. I hate that this happened to my child. It curls my stomach every time a new diagnosis or treatment needs to happen. I’m selfish because I just want him to live a normal life.

Recently strangers have judged me for my sons treatments. I have received stares from people unknown, parents like myself silently shaming what they do not understand. It’s sickening to have society post awareness yet remain ignorant as to why certain treatments are necessary for my child quality of life. I want to yell at the judgmental ass holes; I want them to feel the pain and hurt I feel, I want them to understand that I am a parent barely holding my head above water, and they are the people dunking it under. It’s not their fault this happened. A part of me wants to shake them, the other part of me just wants to them see my child and not his disabilities. In the grocery store as the person states my child is too old to sit in the cart, I imagine her legs being so sore she can’t walk. What would life be like for her then? I know it sounds sick to say out loud. The feelings are there and denying they exist causes feelings of rage and loneliness.

Loneliness, fear, and feeling of rage are taboo subjects among parents of sick kids. I hate being called brave because it’s my duty to make sure my child will live a good life. I signed up for it since the day he was born. Don’t place me on a pedestal because I don’t deserve it. I cringe hard when people say thoughts and prayers or I’m so sorry. Don’t be sorry for me, don’t be sorry for my child. I wish people would ask for more information and actually support research. Another thing stop giving information read off Google and think that it’s helping. Half the articles produced lack scientific research and data to make sense of the illness my child has. I loathe people who think that one persons illness is the same as Dick, Jane, and Sally. No illness can be the same its near impossible. I wish people would understand how frustrating the misinformation is. After being overloaded from appointments to have someone tell you that doctors knowledge is wrong is overwhelming. It adds to the guilt and shame parents of sick kids feel.

Despite crying in my car, laughing nervously in appointments, screaming at total strangers this is parenting with sick kids. When the parent states they need a break from this it means that they feel overwhelmed and scared. It doesn’t mean they want to up and abandon their sick child. The parent of a sick child would do anything to not have their child anymore. Expecting parents of sick children to not break down is unreasonable. On the outside everything seems fine because that’s the way we cope with the pain of our children. Having to hide these thoughts and feelings are detrimental to the mental health of the caregiver. Society holds high judgments as to what parents of sick children should be like. Walking in the shoes of the high and mighty is damn near impossible to not create the persona of someone falsely holding it together. Its being pushed off a cliff into oblivion, no life ring in sight. It’s not as simple as cry it out and get back on the horse so to speak.

Everything in that parents and children life changes from the first diagnosis. Home, work, school and mental self-worth all change. Sometimes the struggle of a parent is to manage the illness but manage normalcy without missing a heartbeat. The caregiver of a sick child often loses their identities as they try to navigate the waters of illness. Looking from the outside within my heart is with the other parents or caregivers who feel alone or at the moment sitting in a quiet place crying. It’s not your fault and your not alone in feeling grief and anger. The world just misunderstands selfish feelings but people trying to hold it together one diagnosis at a time they are not selfish just lost.

Written by Ali Johnson

I Could Pick Myself Apart (Emotional Breakdowns)

In the last two weeks of starting work again after being a stay at home mom for two years I felt like I failed my children. On Thursday night I found myself crying fountains, screaming at my partner on the phone, kids in tow, after feeding them McDonalds. I sat in my red Buick Century clutching the steering wheel my kids watching their mother break down. I had gotten off night shift, my sons babysitter had to cancel, running on no sleep for twenty-four hours… complete dumpster fire of emotion. Officially last Thursday ranked ten out of ten emotional and physical exhaustion of motherhood and marriage.

If someone was on the outside watching me I’m sure they said I was crazy, check me into the mental institution and call it a day. I had no self-control left in the evening. I wanted to be a good mom and wife and do it all. My mother-in-law kept saying she could watch the kids while I slept. My husband and I have been on the outs since going back. I was loading my plate with all the duties mother and wife related without taking time to breathe. My entire situation was a boiling pot waiting to spill over as I kept adding more life ingredients. Is that not what is expected of women today; to balance everything and give it all, with little to no complaints attached?

I’m here to say that should not be the expectation for women today. That should not be the expectation for anyone. Despite that moment in life I feel like to many people try to do it all and then feel guilty when they hit the breaking point. I broke down, and at first I was so ashamed of the things I said and the actions I did. My emotions and exhaustion from trying to do everything without help got out of control. The best thing out of this situation is looking back at why it needed to happen. I’m not happy it took this point of breaking to be heard, but to know that I’m still human and I still have lots to learn about life.

Having time to look at the situation my children had food in their bellies that night. Did I spend the last twenty dollars in my bank, yes I did. They were fed and according to my eldest son he really wanted to go and have time with his mom. I have been working hard the last two weeks at my new job. My son just wanted some mom time because he missed the time we used to have. He didn’t care that it was fast food he was happy that I gave him my attention and time to listen to him. I got to hear all the wonderful things going on at school. Learning about his friends, and what he likes. He didn’t care his mom was in sweatpants or that I felt like he deserved a better mom. Both of my boys ate and had fun just having their mom love them.

In the car I had a massive fight on the phone with my husband. We don’t often fight, and we never fight in front of the kids. On Thursday I was to emotionally exhausted to follow those rules. My husband is a great guy and my best friend. For the last month he and I stopped working as a team that we are. He was tired from work, I was tired from work, we both had been co-parenting just not in sync with one another. That morning I had sent a mean text message belittling him as a parent and a partner. My irritations from work and my doubts as a wife and mother came out and I fully admit I used my husband as a verbal punching bag. Sending that text message was awful, I hurt him because I was hurting. Having that fight oddly brought us together. Even though our children saw it they also get to see their parents apologize to one another, and that shows them it’s ok to have an argument and how to work it out as a team. This argument allowed my husband and I to say what we thought and create a solution for a better future. We both had childhoods where adults fought but never found a way to move forward. Silver linings and all we just have to keep moving and understand we are still learning to love one another by forgiving and being compassionate when we are hurt.

My children saw me cry. I bawled my eyes out and had the best cry. Crying can be healthy. I am the person that hides in the bathroom so no one can see me cry. I have done this since childhood because I was never taught what emotions I could have. Only learning anger and silence and emotions like I had on Thursday were punishable. Growing up in emotionally abusive environments are hard to manage emotions that are out of control. I don’t handle emotional stress in healthy ways. I wait until my breaking point to deal with them. My children deserve different futures from me. Seeing their mom cry showed them it’s ok to feel emotions. It’s ok for them to be upset and express their frustrations. After calming down I explained to my children that mom was upset but it’s not their faults. I also apologized for their mom losing control and I loved them. Explaining to my children that sometimes mom feels upset and needs to find better ways of coping than to yell and scream. It is not their job to solve my problems. It is however my job to teach them it’s sometimes ok to not be ok. I explained to my children they didn’t do anything wrong and held them tightly. When we got home I took some time to listen even harder to their needs because tiny humans need love the most, and I need to break the cycle of the past.

With everything happening I’m here to say my emotional breakdown happened. It happens to so many people in today’s society. People are expected to pile a thousand of things on their plates without complaint. Despite that moment in life I feel like to many people try to do it all and then feel guilty when they hit the breaking point. I broke down, and at first I was so ashamed of the things I said and the actions I did. My emotions and exhaustion from trying to do everything without help got out of control. The best thing out of this situation is looking back at why it needed to happen. I’m not happy it took this point of breaking to be heard, but to know that I’m still human and I still have lots to learn about life.

Written by Ali Johnson

Posting on Social Media Parents of Custody Battles

I have been finding myself angered by people writing hate on their social media during custody battles. Myself, has had problems doing this in the past without understanding the true repercussions of my actions. Stopping my social media hate towards my ex partner and my eldest sons father, puts in context what posting hate about each other affects everyone. It is so simple to say who really cares about the writing and posting of other people. Key problems posting targets is your children, your relationship past and future, your friendships, and your overall mental health.

Every time my ex would come at me for court or custody I would go on my social media and post about how pissed off I was at him. I would write about how much I hate him and I couldn’t believe he would pull that bullshit. Going as far as attacking his now ex-wife on social media because I felt like she was pushing him to argue with me. Looking back on certain posts that popped up on Facebook memories, I am so disgusted with myself. Understandably I was upset with him but to write atrocities as I did, mind blown on reality I would never say what I said about him to my children. If my son read when he was older I could fully understand how upset he would feel. It doesn’t matter how angry you are at your partner unless you want to affect your children mental well-being don’t post hate about your ex spouse or partner.

We as adults cry for people to stop bullying one another. So why as adults lack the ability to take our advice? Relationships and custody are emotionally charged there is not a plausible way to deny it. Every emotion is like a wave during this period for any ending it is a grief period. When kids are involved, posting on social media about their parents is unacceptable because it shows bullying is acceptable. That’s not the intention to bully the other person due to the hurt they have caused: between the lines it is still trying to hurt someone else to feel better about yourself. Due to it being highly public posting about another persons failures is trying to get the mob mentality to dislike the other person. Remember as a child and you couldn’t be friends with the weird kid who had a bunch of rumours on them, by posting hate and only one side of the story that person will become alienated by other people because there are three sides to every story. Who knows if that person posting about their custody battle is telling the full truth or only the truth that makes them look good to others. Victimizing people by one story is easy to do in our society today. All it takes is one social media post and people go crazy without questioning the full spectrum.

All that aside future employers can look up your Facebook and see all the drama that was posted. Was bashing another person worth losing a potential job? This is not worth losing more than what is already lost. I know when I see these posts about parents hating one another and I think to myself these people have no problem throwing other people under the bus to benefit themselves. A future employer would see that as selfish behaviour and shows lack of self-control. Employers want to hire good people capable of behaving like adults. No one wants to hire the playground bully.

Social media is a lawless place anyone can take what you post and turn it around to make it what they need to. Posting has no guarantees others will understand the intention of the poster. Social media has no safety net to stop it from entering into your real life. With everything said on this post the person who is hurt the most from hate on social media is the person who writes the post. Posting negative outlooks about anyone is unacceptable because it affects everyone and yourself. If you need a place to vent about your relationship issues regarding your children find a different outlet than social media. Be the bigger person and move forward without negative repercussions to your life.

Written by Ali Johnson